Wednesday, June 27, 2007

Every now and then, the subject crops up on the message boards about having another child with CF. Cystic Fibrosis is hereditary, and when both parents are carriers of the gene there is a one in four chance that their child will be born with CF. For the majority of parents, they have no idea that they are carriers so the birth of a child with CF comes as a total shock. But once you have one diagnosis, you are aware of the statistical implications of your next born, which brings up the terribly hard question: should you risk having another child with CF?

When I was born, there was no method of testing the foetus for CF. Now things are quite different; there are techniques such as PGD and CVS , which can offer further options and a possiblity to ensure the child does not have CF.

I used to think it was all very clear cut. Having a child knowingly with Cystic Fibrosis was wrong, I was sure on the matter. This was predominantly due to several factors, one of which was several devastatingly sad experiences of young siblings with CF that I knew through hospital. But then I began to grow up a bit, I met several very interesting people, developed close friendships with other pwcf, some who have or have had siblings who also had CF, and who had a completely different view of it all. It began to change my opinion, help me see that perhaps this issue wasn’t as clear cut as I thought.

The one opinion I stand by quite solidly is it does annoy me when prospective parents talk about whether they can cope with two children with CF. As far as I can see, that should not be the issue. Mind you this is not unique to children with CF; this is a frustrating discussion that many prospective parents might have. Yes it is all very well deciding that you can cope with a child and that you want one, but what about the child themselves? Surely the consideration should be whether it is the best thing for them?

I no longer think there is a right answer. Cystic Fibrosis is so unpredictable, you could have a firstborn extremely well child with CF then the next one could be terribly ill. Or vice versa. As for sibling relationships, I am extremely relieved neither of my sisters have to go through what I do, but I also know people who have had life-alteringly close bonds with their siblings and been able to help each other as they both share the same illness.

There is lots more I could say on the matter but I think I will leave it there, open ended. It’s an interesting topic, and I don’t envy the parents having to discuss it and consider all the options. Yes you can have a good life with CF, but it is no walk in the park, it can kill. And there are no guarantees. Mind you there aren’t in any walk of life are there…

17 comments:

Anonymous said...

You are truly a wise one Emily - another aspect to consider and ponder
Loving the podcasts - keep them coming
Lindy x

Lorraine said...

We all make our own decisions in life and we have to live with them as best we can. I don't judge anyone and don't expect anyone to judge me. To have 2 children with CF or have no children at all? That's something only god know's.

Anonymous said...

i have a duaghter with cf and i am 11 weeks pregnant and undergoing a cvs on monday to determine whether my baby also has cf - from a parents side i can promise you it is the hardest decision to have to make and number one concern/consideration is for the child.such an emotive subject, probably more so for you and everyone with cf - but as lorraine said, a very personal choice and there is never a right or wrong answer. really good to hear your opinions/feelings as a pwcf though, thanks emily x

Shadow said...

Can of worms in this house!! If only there was an easy answer.

Emmie said...

As you know Em, I was convceived after my brother had already been diagnosed. Personally I'd hate to think my parents would even have considered aborting me and always felt happy growing up knowing how much they had wanted me and that they didn't care if I had CF, they just wanted me for me :o) I also found it was great to have me and Mark the same growing up and it made CF a normal part of family life.

However like you, I've since talked to many other pwcf and seen other sides to the argument. I do find it hard when I hear of parents with 3 children wcf going on and having a 4th one, as that just seems to be rather flippant about the seriousness of what they may be burdoning their children with.

As with all things there are so many sides and opinions involved. Like you, I'm glad to hear other people's feelings on the matter as it helps to get a more rounded opinion. But then that applies to everything in life really!

Anonymous said...

Sorry, I am dead against it. When I am ill, find myself in hospital, coughing up buckets of blood, talking transplants,etc etc, I know this is no one's fault. My parents had no clue they were carriers. Had my brother had CF and they had 'risked' it with me, I would find that hard to cope with. I love my life but it's not about me. The thought of dying before my parents and leaving them heartbroken would fill me with dread. The thought of leaving behind a loved one/child would be that much harder to cope with. CF as a surprise, I can live with. Knowing someone risked it for me - don't think I would be happy.

fairenuff said...

I have 2 daughters. My first daughter has a genetic disorder. She will need a liver transplant to survive her childhood years. My second child doesnt have the disease, not only that but she isnt a carrier either. After our first child's first year (which was traumatic) things settled down and we knew she would have the best life we could give her. Everyone has to cope with something. Some kids are perfectly healthy but have parents who dont care about them. Every adult will tell you something that they have to cope with. You WILL NOT find 2 happier children than mine. Our whole world is focused on them. My sick child is astounding doctors with her ability because we have chosen to put our time and our future into improving both of theirs. My eldest daughter is going to go through some crappy times. The child in the next hospital bed may have been struck down with a rare disorder that isnt genetic but their parents didnt consider not having them in case they got ill.

Being able to cope with your child's illness has to influence your decision to have more kids. Thats not specific to sick children. If you have one perfectly healthy child but you are struggling to cope with them you should consider whether its a good decision to have another. Its not a selfish decision if I think about whether I can cope. If I cant support that child, show love and understanding and be there consistently - healthy or not - I shouldnt be having that child. If I feel I can cope with what comes my way and deal with it in a way that is right for that child then I think a child who is sick is in a better situation with me than a healthy child I cant cope with.

I am obviously saying all this from a parents point of view. I'm not sure what I would think if I was the child in the family. But I know my children will have a better childhood than me - and I'm 'healthy'.

MoO said...

I have a friend who thinks that they would never have been able to forgive their parents if they knowingly conceived a child with CF.

I have only Grace with Cf and decided that I would not have another child, with Cf or otherwise I felt that it was a decision that I could not have made.

Above all I would not condone anyones decision, but it is exactly that - the parents decision.

Jac said...

A difficult and emotive issue, which I can see from both perspectives. My younger sister and myself spoke about this often, and our conclusion was always that we would rather have been born to our parents and have CF, than be born into another family without. In other words, a parents love and dedication in creating a happy childhood environment can go some way in alleviating the difficulties CF brings. Even now as an adult on the Tx list, my parents are the ones who keep me going and make my life so much easier.

The difficulty comes when you feel decisions to have a child are made without considering the full ramifications of what CF entails.

However I know for most parents this is a considered, and very difficult decision. It is a personal one - and there is no one answer that fits all.

swissfriend said...

Hi Emily,
I enjoyed your blog, it is interesting and balanced as are all of your articles. I wouldn't even pretend to know how difficult it must be both for the child and the parents for any child born with a serious illness but I must agree with you that the wellbeing of the child should come first, considering the awful suffering involved. Of course, for those who risk a second pregnancy - as the diagnosis is only made once the baby is on the way, that brings us to the difficult question of whether to go ahead or terminate; neither solution is an easy one. Had I been in the unfortunate position of having one child born with a hereditary illness, I honestly don't think I would have gone ahead for a second one (I agree with Moo on this). But that is my personal opinion and it's easy for me to say now that I have not actually had to experience such a sadness.

I hope you are taking time out to enjoy life and not spending too long pondering on the unponderable!! Have fun.
hugs, Janet

Anonymous said...

Emily, I know you have 2 sisters, are they older or younger than you?

Love, Randall

Anonymous said...

I am the oldest sibling in my Family and have CF. I'm 29, working and still living a "normal" life I count myself lucky. I have a younger brother and sister luckily they don't have CF. I think decisions are often dependant on each persons and the families personnal experiences with CF.

I currently am against terminaitng preganacy for this reason, I feel I've made my parents proud and they are 100% glad they had me. Maybe my opinion will change as my health deteriorates but right now I believe my life has been worth every second so far.....

Anonymous said...

Hiya must be such hard decisions to make etc and until in that 'particular position yourself so hard to know what you would do........

When I was 16wks pregnant 1st blood tests came back showing 'some abnormality' but despite many tests in 'those days 20yrs ago' couldn't say exactly what problem was etc. I was given options and was soo difficuilt to decide etc to continue pregnancy or not etc...... Finally decided that would go ahead with preganancy and deal with whatever was thrown at us etc..... as already felt bonded with my baby 16wks kicking etc inside me.I prayed to God that if something sooo desperatley wrong nature would take its course.

My baby was born such a beautiful girl and knew then had made right decision for ourselves.... Years later it turned out that my daughter had kidney disease that could have been present or triggered in womb and possible otehr factors triggered the 'hidden disease'. I accept we have had such a rollercoaster ride from age of 2 and finally recieved a kidney transplant age 17. I still wouldn't have made any other decision looking back although you don't know how hard it has been and soo emotional watching your child in and out of hospital all her life etc.It has however made us all as a family soo much closer and appreciate each and every day life gives us........Making us all more determined to help others' in similar circumstances trying to promote organ donation etc.....

It is your decision Emily & A and noone can make that choice for you other than youselves....... best wishes to you both.... and others' in similar situations too.....

hugz Elaine xx

Rich said...

The idea that parents considering having another child with CF is an unenviable dilemma is a misnomer. A Dilemma in the true sense of the word is when a situation is imposed on you where both solutions are undesirable.

Having children is a matter of choice. It's not imposed on you. You can choose either way. The first instance may very well be down to fate, but the second child is down to the parent, pure and simple.

Anyone who chooses to have another child, does so for purely selfish reasons. There are no other ways of making that decision. You certainly can't ask the kid. It's playing Roulette with someone else's life and there's no argument you can make that makes that a noble path to take.

All the other stuff about how people with CF manage and how life is unpredictable and who knows what might happen and how there maybe a cure soon is irrelevant and the lack of humility displayed by some people when this subject arises is staggering.

Emmie said...
This comment has been removed by the author.
Emmie said...

It has always interested me that all those people I know who actually are born into families where they have older siblings with CF, are supportive of their parents actions and pleased that they weren't aborted.

On the other hand, those who are most passionately against a second child being brought into the world with CF are usually imaging how they think they would feel or how they view the situation from their own standpoint.

The desire for a family is an instrinsic part of us as humans.In an ideal world no one would bring children into the world unless all circumstances were perfect - parents with a loving, stable marriage, a good household income, a secure housing situation, excellent genetic background and excellent knowledge of child-rearing and child psychology.

Of course these perfect situations hardly ever arise. If we are going to condemn parents who have a second child knowing they carry a faulty gene, then surely we must also condemn all parents in the third world who bring their babies into a world of poverty, we must condemn all single parents where the child will not have a stable loving pair of role models and we must condemn every couple who being an "unplanned" baby into the world by mistake.

This debate always provides so much food for thought and I don't personally feel it ever produces an easy answer to the issue.

CAT said...

There's no right or wrong answer but having one child with CF ( and a healthy child) I wouldn't personally have another CF child as I think there is an increased risk of cross infection which can only be harmful. I would never knowingly do anything to put my daughter at risk. That's not to say I think it's wrong to have another CF child but it would be my choice.